Ustekinumab and Bloating: What Users Say

• Sic...
• Taken for 1 to 2 years
• December 15, 2019

Ustekinumab for Crohn's Disease "I'm a Crohn's survivor for 44 years. I tried all the old meds and some new ones. Remicade worked best for 3 years and 6-MP for 4 years. Humira worked for 9 years, but all symptoms returned. Stelara was my golden hope. The first 8 months... nothing! Now, one year after the initial IV infusion... much better results... almost too good. Constipation is my norm. Painful gas constantly, bloating, exhaustion, and a simple head cold took forever to leave. Not sure I will continue this. Body aches and joint pain are much worse. My main issues are constipation and exhaustion. I'd rather have diarrhea and a bit more energy. Very disappointed! Good luck, Crohnies!"

• Bbe...
• Taken for 1 to 6 months
• September 9, 2021

Ustekinumab for Crohn's Disease "Just started Stelara. I can tell I'm very tired, and it gives me a little tummy pain and a sore throat. I'm bloated but always have been on and off. Harder stools at times, constipated. I've had 3 bowel rejections and now have 2 fistulas. I'm praying I can get rid of my second one being on Stelara. I'm still having a few flare-ups with fistulas, but hope I will work, yet just started. I'm going to ear, nose, and throat doctor tomorrow. I've had ear pain, inner ear, and headaches, and not sure if any is related to Stelara. It started at the same time and hurts more a bit now, but just had an injection 2.5 weeks ago. I'll keep everyone posted! Has anyone noticed eating issues or headaches, sore throat, and coughing up a little phlegm?"

• Lin...
• Taken for less than 1 month
• May 8, 2020

Ustekinumab for Crohn's Disease "I have recently had my second bowel resection for Crohn's, and today have started my first infusion of Stelara. No other drug has helped, unfortunately. Chronic constipation, bloating, and an inability to digest or process food have left me not really eating at all for the past 2 years. I am hopeful this drug will give me a quality of life again, but am also aware the side effects may become an issue. The depression side of things may be interesting as I am bipolar... hopefully I'm covered there.. Good luck to us all on our journey."

• Chr...
• Taken for 6 months to 1 year
• February 7, 2020

For Crohn's Disease "Crohn's disease for 20 years (diagnosed in 2000), 2 resections (2009 and 2019). Started with Stelara infusion in September and am going today for my 2nd shot (get them every 8 weeks). I can say, so far, Stelara is my lifesaver and has given me my life back. Starting to help almost immediately with the debilitating gas/bloating, and while I still have nothing but watery stools, they have gotten less, and the intensity of when they hit has lessened. Hopeful it continues this good. Best wishes to everyone battling this awful disease ❤"

• Kee...
• Taken for 1 to 6 months
• March 1, 2022

Ustekinumab for Crohn's Disease "Was on Stelara in 2018 for 5 months because my GI told me I couldn't stay on Pentasa forever. I luckily have mild symptoms of Crohn's when on nothing or Pentasa, but then when I switched to Stelara, I thought it'd make my stools nicer and just help with remission (because although I don't feel like I have Crohn's, my colonoscopies and first hospitalization prove me that I do). On Stelara, I experience a lot of fatigue/low energy, feeling like I had more symptoms than usual/cramps/nausea, looser stools than when on Pentasa. So I got off of it, never went back to get injections, and went back on Pentasa, but those pills are way too big, so I stopped taking them, and I started feeling worse. But I never actually saw my results/bloodwork/stool check while on Stelara, and I decided to give it another shot and see how well it's actually working on me. I'm again super tired, crampy, bloated, gassy, can't get over a cold. Hoping to see if it's all worth it at my next bloodwork and colonoscopy!"

• Kyl...
• Taken for 6 months to 1 year
• August 9, 2022

Ustekinumab for Crohn's Disease "I was diagnosed with Crohn's in February of 2022 at 35 (I'm 36 now). Symptoms began around 2018. I've taken the initial IV and 3 injections, all 8 weeks apart. About 4-6 weeks after the IV is when I first began to notice improvement. My fatigue and weakness have been the only 2 symptoms that I've yet to have improve. My last 2 labs have shown a low white blood cell count and a 'bottom of normal' range B12. I'm a testicular cancer survivor recently, so I'm still getting regular blood work done. So fatigue could be coming from the low B, and we are testing for leukemias. I've gone 3 weeks without vomiting, which is a 10-month record for me. Stelara has helped a lot with the pain, fevers, bloating, rectal bleeding, etc. But I haven't quite gotten back enough to be confident out of the house."